A Cure for June

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On September 11, 2012 our family welcomed beautiful baby June into the world! Little did we know June had a surprise hiding inside...

The first four months of June's life went pretty much as normal as can be for a newborn/infant. She was a happy, calm baby and developing normally. Around 4 months of age, June started to become very irritable at times & shortly after that June's development milestones began falling behind but we were always assured she was just "delayed". As is typical with Rett Syndrome, this was the beginning of a painful period of regression where significant changes happen and previously acquired skills are lost. In October 2016 after 4 years of waiting & searching for answers and countless visits to specialists we were finally given the answer - June has Rett Syndrome.

It is impossible to describe the pain you feel as a parent watching your child lose skills, experience excruciating pain and be unable to communicate. Life is not easy for June - her days are filled with doctor’s appointments, medical procedures and all manner of therapies. She cannot talk, she cannot use her hands, she holds her breath, grinds her teeth, has seizures and is tube fed. She experiences mysterious acute abdominal pain on a daily basis that usually leaves her writhing on the floor and occasionally screaming. She wears glasses, leg braces and a backpack carrying a pump and her food that feeds her all day long. She needs a wheelchair for anything more than a short walk. And even through all of this, June has a beautiful eyes and a smile that will warm your heart!

But there is hope. Research has shown Rett Syndrome is reversible and potentially curable. The Rett Syndrome Research Trust's strategic plan, Roadmap to a Cure, strives to raise funds for clinical trial research towards a cure for Rett Syndrome. This research is not possible without donations from families and friends of those affected by Rett Syndrome. We would be forever grateful if you chose to financially donate to support research that will help June, as well as the other 350,000 (mostly) girls worldwide who are living with Rett Syndrome and giving hope to their families. Each and every dollar donated will get us closer to a cure.

Our goal is to raise $10,000 by the time June turns 6 and we'd love for you to join in!

Thank you!

Josh, Stacy, Oliver & June

What is Rett Syndrome?

Rett Syndrome is serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.

Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.

Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. Our confidence that Rett Syndrome is curable guides our every decision.

Learn more about Rett here.

Who is RSRT?

The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive the development of treatments and cures for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world's premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.

By funding the most Rett research worldwide, $35 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

Supporters (32)

  1. HENRY & SHEILA KENNEDY 
    18 hours ago
    $1,500
  2. Sue Brennan 
    3 months ago
    $100
  3. Barbara McCulloch 
    3 months ago
    $40
  4. Melissa Faulkner 
    4 months ago
    $100
  5. kyle mcculloch 
    5 months ago
    $25
  6. Josh McCulloch 
    5 months ago
    $120
  7. Ryan Drake 
    5 months ago
    $100
  8. Sheila KENNEDY 
    6 months ago
    $1,000
  9. Angela and Darrel Cragg 
    6 months ago
    $500
  10. Falcon Heights Contracting 
    7 months ago
    $500
  11. hossein ghodrat 
    7 months ago
    $200
  12. Mari O\'Meara 
    7 months ago
    $200
  13. Allen Poutanen 
    7 months ago
    $100
  14. Anonymous 
    7 months ago
    $50
  15. Anonymous 
    8 months ago
    $50
  16. Kyle McCulloch 
    8 months ago
    $93.53
  17. Rogier van Tilburg 
    8 months ago
    $78.58
  18. HENRY KENNEDY 
    8 months ago
    $1,000
  19. dale huberts 
    8 months ago
    $100
  20. Anonymous 
    8 months ago
    $100
  21. Barry Buchkowsky 
    8 months ago
    $50
  22. Barbara McCulloch 
    8 months ago
    $250
  23. Jacob and Cynthia Roorda 
    8 months ago
    $100
  24. Shelley Brown 
    8 months ago
    $100
  25. Michelle Monahan-Brar 
    8 months ago
    $100
  26. David Hilderman 
    8 months ago
    $250
  27. Judy Copithorne 
    8 months ago
    $100
  28. steve and cathy sakiyama 
    8 months ago
    $100
  29. Anonymous 
    8 months ago
    $100
  30. jill stevens 
    8 months ago
    $250
  31. Erik Larsen 
    8 months ago
    $100
  32. Josh McCulloch 
    8 months ago
    $1,000

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